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#277449 - 03/06/17 06:36 AM How do I get MTX? Doc wants me to take TNF blocker
worldofme Offline
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Registered: 08/12/15
Posts: 377
I can't seem to get my doc to understand that I DON"T want TNF blocker yet and would like to save this for last resort. I asked for MTX and he simply refuse to give it to me saying it won't work for spine pain. Why not try it I ask?

Should I get a new doc?

He also don't prescribe pain killer / NSAID other than Duexis / Vimo.

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#277450 - 03/06/17 09:48 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
Sheep1 Offline
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Registered: 08/12/15
Posts: 204
Your doctor is right- MTX doesn't do much for spine inflammation of AS. I don't understand the mechanism, but MTX seems to only work on peripheral joints- fingers, toes, knees, elbows mainly.

TNF blockers, in my opinion, are safer than NSAID's. Taking NSAID's daily at high doses has a risk of cardiac event (heart attack, stroke) or gastrointestinal bleeding.

The main risk of TNF blockers is infection, the most serious is tuberculosis, but to be honest, the risk is quite low. I had my husband look at the data (he is an epidemiologist at a drug company) and the people who tend to get infections are elderly. If I lived around people that had tuberculosis, I would hesitate to take a TNF blocker, but most of us in the US are not at that great of risk. There is some risk of lymphoma, but it is very, very rare, there is a greater risk of having a heart attack from chronic NSAID use.

And taking TNF blocker early is the only treatment that has been shown to prevent damage to the spine over long term. NSAIDS help with pain and inflammation, but they don't prevent long term damage.
_________________________
48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009

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#277452 - 03/06/17 01:15 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
What is your take on Cimzia?

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#277495 - 03/10/17 04:30 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
mpc2012 Offline
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Registered: 03/15/09
Posts: 316
Why not take a TNF? I have been on them for over 15 years now and no problems. TNFs are much safer than the other options. And TNFs stop the progression of the disease.

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#277514 - 03/11/17 11:53 AM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
GardenGnome Offline
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Registered: 08/28/16
Posts: 72
First of all you said your doctor will not prescribe NSAIDS. Duexis is a NSAID mixed wit hanother drug to prevent/slow down ulcers. Secondly, he shoudl be able to prescribe MTX but MTX alone isnt shown to work well on spinal inflammation. You ARE on your last resort. Biologics are wonder drugs for this disease. They all seem to work well. Remicade, Simponi, Humira, Cimzia, Enbrel. Remicade seems to have the most sideffects out of those but only by a little. Humira is the most used and the #1 or #2 most profitable drug in the world. Simponi seems to have less antibody formation that the others which is good. Listen to your doctor and take your biologic drug. Why wait? You'll jsut damage yourself by waiting and then eventually taking it.

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#277516 - 03/11/17 08:35 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
Just afraid of the side effects from all this.

Humira scared me


I'm still in denial thinking my arthritis will go away once I take the right abx. This seems to be far from truth.


How to tell damage without mri? I'm going for one in few weeks.

It's just most doctors non rehumi, think tnf are so bad for you.

How about ldn?

My spine cracks, make popping noise and fatigue.

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#277517 - 03/11/17 10:48 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
GardenGnome Offline
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Registered: 08/28/16
Posts: 72
What side effects are you specifically scared of?

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#277526 - 03/13/17 02:57 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
Reactivation of post ebv, cmv , cancer, and breathing issue, and heart pounding.

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#277529 - 03/13/17 07:16 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
GardenGnome Offline
Registered Visitor

Registered: 08/28/16
Posts: 72
Breathing issues and heart pounding and throat swelling would be an allergic reaction to the injection that is why a nurse help you inject the first time so they can give you meds to stop that if it happened(benedryl and prednisone). Once meds are given that goes away within minutes. The chance of that happening are higher with remicade since its a chimeric drug and IV. Humira, simponi, cimzia are fully human and the risk is drastically reduced to lower than 0.1% of injections. That means it doesnt happen 99.9% of the time. Ive spoken with numerous nurses and doctors that have 100's of patients who use these drugs and ALL of them have said that they have never had a patient have an anaphylactic reaction to those. Think about that. Lymphoma caused by TNF inhibitors seem to be non existent in AS patients but existent in RA and Crohn's patients. However, very rare. You have a better chance of dying while traveling in a car than getting these side effects. Stop worrying so much. You have a chance to die from everything you do everyday. But you arent worried about that. The most common side effects are upper respiratory infections like pnuemonia and bronchitis etc. That is wh you get a pnuemonia vaccine before hand. And if you did get that you jsut take antibiotics for it. Those things are more of a problem for the elderly. Remember those side effects you hear of also include elderly people who have a hard time when something goes wrong. I was scared of taking Humira and gave myself panic attacks everytime i took an injection. Nothign ever happened but i woudl wait for it to happen. I didnt even get local swelling or pain where the injection was put. Nothing at all.


Edited by GardenGnome (03/13/17 07:21 PM)

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#277542 - 03/14/17 04:09 PM Re: How do I get MTX? Doc wants me to take TNF blocker [Re: worldofme]
worldofme Offline
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Registered: 08/12/15
Posts: 377
I don't have specific AS diagnosis but " Seronegative Spondy" doc says same thing treatment is the same biologics.

Would this work for Chronic Reactive Arthritis?

I am HLAB27 Negative.

INsurance won't approve enbrel until I take Cimzia.

Do you skip your shots?

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